Hi All!
Anyone out there trying the Combined Antibiotic Protocol for MS?
Anyone seen the Catalyst video on You Tube showing MS cured called “MS Cure?”
http://www.youtube.com/watch?v=EpMvDe8-qsM
G
No. Very wary of any so-called cure. Scientists all over the world are devoting their work to finding a cure for MS. Don’t you think if a real cure had been found it would be publicised in medical journals and newspapers rather than on YouTube? I will bet my bottom dollar somebody somewhere is laughing all the way to the bank. Sorry but I don’t believe it for a second. Pat x
Hi!
Oh, right … “You’re betting your bottom dollar” that someone’s laughing all the way to the bank! So are you betting? Was this just a turn of phrase … or are you actually gonna put some hard cash up? Nah, I know. You’re not actually gonna bet any actually money. You didn’t watch the video either, did you? If you had have watched it, you’d have realised that there IS NO MONEY TO BE MADE OUT OF THIS. Just like LDN and other out-of-patent “orphan” drugs there’s no money in it. Drug companies and their reps will not be pushing this because they can’t make a buck on the back of your illness.
I am Primary Progressive. Nobody in the pharmaceutical industry is working on people like me. I am going to do whatever I can for myself. I would prefer my headstone to read “killed in action!” rather than “Never bothered trying”.
I am always amazed at the attitude of many MS Society members. I have compared them to someone who is laying with their legs sprawled across a level crossing. Even though they don’t have a train timetable … they know the train is gonna come … and they know what it’s gonna do. I say “Get up! Get off those tracks NOW!” (I can hear that distant echo “Oh, but there’s no proof!”)
Tonight was an MS night in my town (it’ll have finished about twenty minutes ago). I could have gone but didn’t; I ask myself, “What’s the point?” They are good as a Tysabri Support or promotion group. To me, I don’t see the MS Society as a freeway for open thought, more as a guardian or The Gatekeeper of the Established Way. This was the same MS Society that would have censored any mention of therapies (such as LDN) that did not meet the approval of their established diktat. I suppose we have, at least, moved on from that (I hope).
G
I’m with pat on this one! If you google MS smart trail you will find there is considerable research being done on progressive MS! I for one think The MS society is a wonderful charity I’m sorry it’s not to your liking. Maybe MSUK would be more to your taste…they are always reporting so called cures.
I think you must be confusing this site with another one, because alternative treatments are freely discussed here. In fact, Dr Wheldon’s Protocal has generated a few threads, including contributions from his wife Sarah, who I understand has benefitted from the treatment.
What people are highly skeptical about is the word “cure”, for the perfectly good reason that there is not one. Frankly, making ridiculous assumptions about other MSers is not particularly helpful and does you no credit.
Makes you wonder? The one thing the film did not show, is what negativ effect will it have on the body to be on antibioticd for so long, the presense of bacterias in our body are quite important for us, if they get cleaned out, what will happen? But who are we to say that the theory is wrong?
Hi
Firstly, as a paid-up member of The MS Society I am as entitled to pass comment as anyone else.
I note the suggestion that “Maybe MSUK would be more to your taste…they are always reporting so called cures.” Well, if there are “Cures” out there then it’d be good to here about them on here too.
Whamell says:
“What people are highly skeptical about is the word “cure”, for the perfectly good reason that there is not one.”
Wow … that’s a pretty grim: Zurich here we come! Yeah, to say “There is no cure” not that we haven’t found it yet or those that claim to have been cured have not been validated yet. No: “There is no cure”. Well you just stay sitting on that level crossing then. The protocol has been designed by expert doctors and have fully taken account of the risk of antibiotic resistance and the effects of the subject patient.
Regarding the long-term use of antibiotics, this issue has, naturally, been discussed elswhere ad nauseam. There are two main aspects to that issue:
The impact on one’s own body by continued use;
The impact on our world by the use (or over use, as seen by some) of antibiotic medicines against pathogens that are not even proven to have been infected.
The handbook and guidlines issued by cpnhelp.org covers these and the other issues in great detail. I started antibiotic treatment back in May; I take the probiotics as prescribed and haven’t had a problem in this regard.
In terms of the emerging antibiotic resistance that has become an increasing problem over the last 20 years, I mused much on that subject. I know that agriculture is where most of the antibiotics go (then into your food). I gringe at the UNDERPRESCRIBING of antibiotics by GPs and insufficient sub-clinical doses given out to patients powerless to argue; a course set to breed resistant pathogenic strains.
Anyway, my view is that if anyone can get better, good on 'em … whether that be by act of God, Homeopathy, antibiotics or just bloody good fortune.
One other thing I will say is this:
If it were just and only Sarah Longland that had made a recovery, then I’d be writing this off as a fluke … but it isn’t just the one person. A long while back, I posed the question “How many are there?” and a woman came back and said that not everybody checks in or post … with some of us, we got our lives back and moved one. We do other things now … not posting about treating MS.
G
This is getting a bit heated. I have something which mimics ppms. It could be radiation myelopathy as I was told by private neuro in 2011. Or spms after benign ms since 1990, or in fact ppms. Second NHs neuro disregards first neuros opinion. Anyway last year I had a treatment of avastin which cost me £6000 as I read on Internet that it helped reduced lesions for radiation myelopathy. Anyway an MRI 6 months after the treatment the lesion had resolved. I felt so must better although the spasticity remained. When I told the NHs neuro that I had gone back to first neuro who had agreed to the treatment privately he was cross and said my MRI improvement was nothing to do with avastin and I had just got better myself. He was cross that I had returned to the private sector and discharged me from his NHs clinic! I went back to private guy this October as was starting to feeling ill again. I had another MRI done privately and the lesion had returned. Now I don’t know whether the June MRI was correct and can’t get anyone to verify that for me. If the avastin worked do I need more . I just don’t know. I feel that I am controlling my own treatment. MOYNA xxx
G your comments have hit a nerve in my opinion. We are all individuals and most of us are intelligent, well read and mature. To hint that we are unable to discuss or consider treatments available is not accurate. We all know that we can’t be cured and if you keep up to date with posts you’ll see that we all have different ways of coping. To compare us to someone lying on a railway track not wanting to move is quite insulting.
I’m very happy to try new treatment methods that I have read up on and think they have a realistic chance of improving my quality of life. I was a nurse before this illness so I think I understand the effects things will have on my body. I am a guinea pig trialling a new disc in my neck as it makes sense but I’m content managing my ms with symptom management. That does not make me a coward, I didn’t ask for this or want my body to fail but I don’t believe there is a treatment currently available that will improve my current quality of life.
We’re all different with individual ideas, symptoms and coping strategies. I respect your aggressive management of your illness but take offence at you ridiculing mine. Please show respect to those of us who have different views.
Cath
Just the title of this thread makes me think one thing - itchy!!!
I hate taking antibiotics with a passion, since as one GP put it “your nervous systems is breaking down” after getting over-done on antibiotics when I had an infected wisdom tooth (GP & dentist medicating me over a couple of months).
Anyhoooo, if a proven cure shows up then I’d probably take it even if it made my hair fall out! 
Sonia x
Supaguy obviously upsets some, but after all, a Forum is for discussing and airing opinions and information, and I welcome his contribution. Of course most of us reacts strongly when we read about “Cure for MS”, because so far there is no such thing, but if there ever is to be found one, no doubt that will come from an un-expected angle, and it will upset many, and the number of people believing in it will be small to start with. If people never looked at things from new angles, nothing would ever get invented. They tell me there is 100.000 people in the UK with MS of some kind, so obviously the number of people that wants to find a cure, are numerous. I am Norwegian, and I speak/read Norwegian, German, Swedish, Danish and English, and it is nearly a dis-advantage to me, because the information available to me on the internet is too big for me, but I do (as I suppose thousands of others do as well) read whatever I can come across about MS, because, of course I want rid of it, or at least something that may improve the quality of life for me. Which by the way is pretty low at the moment. If I was just to sit down and believe every word the doctors an MS-nurses tells me, i kick myself for not hanging myself in the staircase of my big, old house. Now I live in a bungalow, so I have not got that option any more. Joke aside (dark one, I admit) All the Proffessional people dont REALLY know how bad it is to live with an advanced form of an illness that everybody tells you cannot be cured. We, the patients know, and to discuss possible cures on a Forum MAY one day give us some of the answers we are seeking. Let’s face it, at trial may involve a small number of people, experiences and information can be shared by thousands, even millions world-wide. Nothing wrong with thinking “outside the box”. SHARE experiences and possibly useful information, take part, that is what a Forum is for!
Oh, and by the way: If somebody feels like learning more about Combined Antibiotic Protocol, I found this quite good:
http://www.thisisms.com/forum/antibiotics-f28/topic6557.html
Yes I agree with above and I don’t take general comments personal in any way. There are probably many different factors that cause ms which is why no definite cause has been found. The Epsom Barr virus tends to be a big suspect. It must be some sort of virus or bacteria iif the immune system is activated. The drug companies want to find an expensive cure not a cheap one. That can be the only reason why Ldn has not been given significant research. There is ne news that the tb vaccine can help prevent an isolated attack becoming ms. If I was in that position I would insist on having the jab. For 2 reasons it has already proven to be safe and secondly I wouldn’t want to wait 10 years to prove or disprove the theory when ms couldhave taken hold Thing is will the trial be done or maybe not because not enough money to be made. MOYNA
Hi All!
For me, the end of a long working week; once I have written up my work and back reported I’ll be off for the rest of the year. I have had dive at my local MS Therapy Centre this afternoon (a “Dive” meaning a session of hyperbaric oxygen). Hopefully this will give me some strength & stability in my legs but as things are, I continue to go down hill.
Mmm … yes there is an air to the responses on this thread which I find entirely in tune and in keeping with The MS Society as it always has been. Did you know that at one time, anyone mentioning LDN or Hyperbaric Oxygen would be cut off by the “Moderators”. How do I know this? Because I know one of the moderators that had to do just that. At least The MS Society has moved on a little from that, I suppose.
Yes, it seems that some people do not like what I say; really! Cath, for one already knows that I am wasting my time and that my efforts with antibiotics are futile and useless. Cath, if I had your foresight I’d have only needed to buy one lottery ticket tonight. The chances of me winning The Lottery are neglegable … but I still hope.
I had no idea what treatments that you were engaged in; I didn’t mention them so could not ridicule them. I will state that I respect anyone’s right to hold a viewpoint (and express it) … but I do not respect your view. I reject the doctine of despair and I embrace the path of hope and enlightenment. You are free to preach that “MS cannot be cured” and I am free to pursue any course that is open to me. Whether someone used to be a roadsweeper, a brain surgeon or an MS Nurse … it matters not to me when they are wrong.
Hey Moyna, I really do understand and have absolutely no trouble believing the attitudes and actiond of your NHS neurologist. Here follows a cutting for a peice that always startles me and those I tell. After the clip I will paste a link to the full exerpt:
One neurologist refused to look at the
improved follow-up MRI of a recovering patient when the radiologist was about to place a film on the
light-box. He apparently held up his hand and exclaimed ‘I can’t see it!’ Another neurologist told a
patient with primary progressive MS not to darken the door of his office again after she had
commenced antimicrobial treatment. Her EDSS had improved from 6.7 to 2 on his own assessment (an
improvement almost unknown in the natural history of untreated disease) but he had no wish to
examine the cause of that improvement.
http://beyondthebandaid.com.au/wp-content/uploads/2012/07/Sea-Changes.pdf
Earlier in this thread Thorleif mentions a link to thisisms if anyone really wants to find out about this; the pukka site for the combined antibiotic treatment is: http://www.cpnhelp.org/
It maybe that the treatment I have undertaken does not work for me. There is another You Tube video out there; in fact it’s a serries of videos - a video log - with a very smart lady chronicling her experience doing CAP. Her conclusion on the final log is that it hasn’t worked for her. She says that she has gained no benefit whatsoever. Well, at least she tried.
There are a good few people at my local MS Therapy Centre watching how I am doing. I would love to be able to be able to say “Hey, there’s something in this: give it a go”. As yet, I am not in a possition to say that. What I can say is that every one of those people, staff and clients, wish me well and are cheering me on. I believe the moto of these centres is “Self-help is our way of action”.
I am gonna have a little drink tonight and again around Christmas; I’ll have to make the most of it because after Boxing Day through to New Year, I will be “Pulsing” a powerful antibiotic wich does not mix with alcohol. A dry New Year’s Eve for me this time. I am gonna do my dammedest and give this my best shot.
G
Go for it, if you believe that whatever treatment/therapy your trying is going to be good for you it propably is, i’m sure a few rum and coke’s tonight will do me the world of good ,who agrees? lighten up everybody and try some of this rum and coke or whatever you fancy
Cheers
Mark.
Hey Smacks,
This is what they call a “Deserted thread”. The reason that it has been deserted is that the were some logical common sense arguments put forward that were outside of the comfort zone that those that come here normally inhabit. The very prospect of getting well is going to appear very threatening to some. A decision has been made to boycot this thread en mass (I say “En mass” but there are only a very few here anyway).
Whether or not I can join you for a drink on New Year’s Eve is still to be decided (may be taking meds that don’t mix) … but if I can - mine’s a scotch & coke.
Happy New Year to you.
G
You would really expect this thread to spark a debate?
I wish it would, because then we could get answers, because I refuse to believe that David Wheldons wife is the only MS patient in the UK to have tried this?
These two threads covered anti-biotic treatment, but they are a couple of years old now.
http://www.mssociety.org.uk/forum/everyday-living/english-and-australian-mavericks
http://www.mssociety.org.uk/forum/everyday-living/protomyxzoal-infection-protopac-treatment
Yes Thorleif
You are right, right, right many times over. David Whealdon’s wife is by no means the only person to try this. Actually, the only reason David Whealdon used this type of protocol was that he was desperate … it was not just some a patient, it was his wife that was dying. And one other thing to remember here: He (Dr Whealdon) did not invent this; no, it was already patented by Drs Stratton & Mitchell of The Vanderbilt University Hosp in Tennessee. They had already had successes there and their successes continue.
There are many people currently trying this. There are many people that have succeeded. There are many that have given up on the road and have fallen by the wayside. I am trying it at the moment myself. I cannot say that I am successful as yet but I am expecting to go quite a way yet before I can expect to reverse my situation. Whatever I will report will be honest and truthful. I am another ill person just trying to get well; I am another MSer just like you. If we progress and get iller together, that does not make my situation any better. I am looking for a way out of this for me … and if I find it, I will be shouting as loudly as I can for others to follow. Sadly though, I suspect that if I were to shout here, I would be duely and dutyfully ignored.
By the way, you mention " … in the UK". It doesn’t mater where in the world you live, if it works, it works.
If you want to talk sensibley to people that are doing this protocol then you can: http://www.cpnhelp.org/
The thing about here is there is nobody here … but for a few of the same people clicking each other’s “Like” buttons.
There was a member earlier on saying what a wonderful organisation the MS Society is. It is certainly a rich organisation and it is “Assumed” to represent us people. Even my GP refused treatments to me earlier on in the year quoting the MS Society and MS Society resollutions. I want and MS Society to fight for me … not work against me. There was a post on here about 18 month ago: http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/word-it-sacked-8
I want an MS Society that would have rallied to that member’s aid; mounted a legal challenge on behalf of that member. All very well sending “Hugs” but hugs don’t pay the mortgage or put bread on the table. If I want help to fight against discrimination, The MS Society should be a big gun in that fight … is it? You know the answer to that! When I wanted help to do a PIP claim, was the MS Society able to provide someone to assist? No! All they could advise was to go to Citizens’ Advice. The 2nd comment on this thread made a comment about " … all the way to the bank". Yeah, well you look up how much money The Chief Executive of this organisation gets … go on!
There will be no debate here because they ain’t up tp it!
Happy New Year when it comes,
G
Hi
Supaguy68, i have been diagnosed for 3 years and have been going downhill real quick in the past year. I agree with what you say i have seen numerous neurologists and go through about 30 minutes of tests and questions “cant walk straight, as wonky vision, tremors etc etc” every time. I then ask “what are you going to do about it?” To which i am always met with a blank look…great.
i too am going to try the antibiotics in the new year, i wish you the best of luck i sympathise with your frustration.
I wish everyone a happy new year.
Nei.